Too many meds?

[JMTky]

Hello,

I am looking for some insight regarding long term IBD medication use. I've had success maintaining my health on the following meds and their dosages but am becoming concerned for my future health and possible side effects.

I am 43, weigh 80kgs and am currently taking:
-Prednisone: 5-7mg daily
-Imuran: 150mg daily
-Remicade: 400mg every 6 weeks

I was originally diagnosed with Ulcerative Colitis and had j-pouch surgery in 2002. After about a 10 year remission from the illness, it crept up into my small intestine and is now thought to be Crohn's Disease hence the current diet of medication.

I tried switching from Prednisone to Butesonide but ended up with a flare, returned to Prednisone, and am currently tapering from 30mg.

My doctors are trying to ween me off Prednisone because of the long term side effects. They don't seem to be concerned with Imuran or Remicade.

They have also asked me to consider a permanent ostomy which is not out of the question, but I would prefer keeping my j-pouch and continuing with the meds. It seems difficult for me to completely come off Prednisone and will probably have to continue a maintenance dose of some kind.

My question is what is considered a "maintenance dose" and what is considered excessive.

If there are also any opinions about going the permanent ostomy route in order to quit the meds completely, I'd like to to ask about that as well.

Thank you,
JMTky

 

[ronroush7]

Hi. You might have to taper off of prednisone at a slower pace. Ask your doctor.

 

[shamrock15]

How long have you been on remicade and imuran? Imuran takes some time to build effectiveness, and remicade is variable. It is common to stay on pred until the previous combination takes effect.Both remicade and imuran are meant to be long term medications. I have been on them for 9+ years now.

 

[Linds89]

My understanding is that prednisone maintenance doses are usually 1-5mg, but I agree that maybe a really slow taper (like 0.5-1mg per taper) might help. Talk to your doctor and see what they recommend. I've heard some people having an endocrinologist supervise their tapers if they have trouble coming off longterm steroids.

As said before, Remicade and Imuran are supposed to be longterm meds, and most doctors recommend staying on them even if your symptoms go away so that they stay away and don't come back.

Of the meds you are on, Pred is the one to try to get off of-- as I'm sure your doctors have told you. A lot of people have withdrawal so your doctor will need to monitor you closely to see if you are actually flaring or just having withdrawal symptoms; if its just withdrawal you may just have to taper slower or try to just persevere through the symptoms until your body recovers-- easier said than done, for sure.

Supposedly, the longer you are on the steroids, the harder the taper and longer the withdrawal as your adrenal glands take longer to "wake up".

I don't have any answers about the ostomy bags though or how that would affect you medications.

Good luck and keep us updated!

 

[JMTky]

How long have you been on remicade and imuran? Imuran takes some time to build effectiveness, and remicade is variable. It is common to stay on pred until the previous combination takes effect.Both remicade and imuran are meant to be long term medications. I have been on them for 9+ years now.

I've been on Imuran and Remicade for about a year but can't seem to quit Pred. Now considering Stelara in place of Imuran and Remicade.

 

[ronroush7]

Best to you